Hospital-based home care for children with cancer: a qualitative exploration of family members' experiences in Denmark

Abstract

The study aims to describe the experiences of a hospital-based home care programme in the families of children with cancer. Fourteen parents, representing 10 families, were interviewed about their experiences of a hospital-based home care programme during a 4-month period in 2009 at a university hospital in Denmark. Five children participated in all or part of the interview. The interviews were transcribed verbatim and analysed using qualitative content analysis. The findings indicate that hospital-based home care enabled the families to remain intact throughout the course of treatment, as it decreased the strain on the family and the ill child, maintained normality and an ordinary everyday life and fulfilled the need for safety and security. According to family members of children with cancer, hospital-based home care support enhanced their quality of life during the child's cancer trajectory. Our study highlights the importance of providing hospital-based home care with consideration for the family members' need for the sense of security achieved by home care by experienced paediatric oncology nurses and regular contact with the doctor. In future studies, interviews with children and siblings could be an important source of information for planning and delivering care suited to the families' perceived needs.